Tuesday, June 07, 2011

It's a Hard Knock Life

Thanks to Marie Taylor, I am updating my status today. Once again, Marie - Thanks for asking!

My attentions have been elsewhere since writing about my amazement at the Radiation Treatment process.

Thanks to Great People in My Life

It's amazing the wonderful folks who've reached out to wish me well and give good words of support. Especially my wife who has long ago gone so far "Above and Beyond" that she may be spending part of each day somewhere on the Moon!

So, How Goes The Good Fight?

Essentially, I have resolved myself to admit that the pain in my back was caused by a tumor of Multiple Myeloma. My oncologist and neuro surgeon both described it as a plasmacytoma (a lump caused by a mass of extra blood plasma cells). And that means my cancer had returned. I had a relapse.

Even just writing that makes me so sad because I had firmly believed I had it totally whipped back in '06. Seeing myself in some kind of a war that will be fought as a series of battles is truly intimidating. It scares me. I am really frightened by what that means for my future. I don't want to fight with anything. It's not a good fight. It's not fair - I didn't want it and I still don't and it really is a lousy thing to go through.

That's how it goes. I wouldn't wish it on an enemy.

So Today -- Here's How It Goes

Right now, I am fighting back from my second go around with my cancer. You can read about my radiation treatments in my previous post. It continued through the entire month of October. In November I exercised, ate well and asked to go back to work at the Defense Logistics Agency - Philadelphia. (Do you all know that my 'day job' is as an Oracle Database Administrator?
It is.-) On December 6th, I was on station and performing my duties as tasked (translation: 'back at work').

So; I did get some relief, but not all that much. I was on pain medication still and it wasn't doing its job too well. In hindsight it looks like I was alternatively too cautious/too slow to increase pain relief early enough and too optimistic/too quick to interrupt/skip pain relief in the early days. However accurately I try to explain my attitude as a patient, for sure I was getting a lot of pain from the tumor. When early in my radiation treatment, I had started to get relief, I was hoping the speed of the relief would at least just continue. But it didn't continue to reduce in intensity or even to respond very quickly at all. It sort of flat-lined.

My oncologist said that he believed the tumor would eventually respond to the radiation. None of my lab work showed any cancer activity. All of my metabolic indicators showed that I was healthy. The question was how to handle the pain.

On the second to last working day of 2010, I was told by my oncologist that I would do better at home than continuing to attend work. Fortunately my disability insurance gave us partial income and we moved forward.

Spell Relief: I-S-I-D-R-O

Dr Juan 'Pete' Isidro at Hoboken University Medical Center in Hoboken, NJ (Frank Sinatra's home town!) took a special interest in me and he has been my my Anesthesiologist/Master of Pain Management since the beginning of this battle. Once it was clear that I needed to really get a handle on pain as the one treatable condition; He has been in contact a few times a week to make sure I am okay.

Somehow; over a longer period of time, the pain has gradually subsided. And over the past two months I have been pushing very hard to get off of the several medications it took to keep the pain down/handle pain spikes. This past month, I have been maintaining with just one (very strong) medication four times a day - 4am, 10am, 4pm, 10pm. I want to go back to work.

On Friday, I believe it is possible that my Master of Pain Management, Dr Isidro, will lay out a plan for weaning me down from this one.

Pain Meds - Smain Peds!

Ha! Did they ever tell me this would be a walk in the park? No; They Did Not. So you can only begin to imagine if you have not done it yourself what it means to use a medication powerful enough to stop the pain signal from your back / not allow it to get to the brain WHILE allowing you to walk around and be with your family. That is a tricky medication with oodles of biological implications. Then there is also, "The Process of Getting Off." Reducing the number of different pain medications and the quantity of medication has been very challenging too -- once we get them high enough to address the pain, then my health regenerates without the stress of the pain, and the pain subsides. Then I have to get to the point where I feel ready to ask for help reducing the medication to a lower level; (you DO actually know this one -- it's just like 'Apply - Rinse - Repeat').

At one point my pain meds were high enough to stop a full grown horse in its tracks. But my pain was so high, that such a large amount of medication did not stop me -- just allowed me to get on with my dailiy life -- albeit in a bit of a wobbly condition! Maybe there could have been other ways to do it. I do not know. That was the way it got done by me and my healthcare team.

Today Is A New Day

My employer (a Defense Contractor called, Salient Federal Solutions) says they are trying to speak with the department (J6PS) that has contracted for my services as an IT Hired Gun, but they have not been able to reach anyone able/empowered to welcome me back to work. So I am in limbo -- no disability benefits, no income and no one on the phone!

{ Little Orphan Annie's song, "It's A Hard Knock Life" just began playing in the background here... just for me... %~) } Anyway ...

That's My Story And I Am Sticking To It!

- Mark